A Letter to LGBTQ Youth On the 30th Anniversary of ACT UP

ACT UP, the radical AIDS activist coalition, was founded in 1987.

Dear LGBTQ Youth,

This year, March 30th to be exact, is the 30th anniversary of the founding of the radical activist coalition ACT UP. ACT UP, an acronym that stands for AIDS Coalition to Unleash Power, led one of the most impactful activist movements in history in response to the lack of attention of the United States government and the medical community to the HIV/AIDS crisis of the 1980s to the early 1990s. ACT UP member Jon Greenberg explained the mission of the organization in this way:

ACT UP, the organization, does exactly what its name says. We do demonstrations, and act in such a way that the authorities (and in this case we mean government officials, researchers, politicians, the church and the law) feel is inappropriate but ultimately accomplishes our goal by bringing into focus the problems which they are unwilling or afraid to address. Once again, let me return to the official definition: ACT UP (AIDS Coalition to Unleash Power)is a diverse, nonpartisan group united in anger and committed to direct action to end the AIDS crisis We meet with government and health officials; we research and distribute the latest medical information; we protest and demonstrate. WE ARE NOT SILENT. (“ACT UP Explained”)

I’m not going to lecture you about getting tested or knowing your status — you’ve probably gotten that messaging elsewhere. Instead, I’ll focus on history. Do you think or worry about HIV/AIDS? AIDS is probably not the social justice issue most on your mind. Perhaps this is because you have always lived in a world where HIV/AIDS was, in some way, a part of your reality. Those of you born after 1995, there has always been effective treatment. Today, there is also the option of PrEP, or pre-exposure prophylaxis, an HIV prevention medication that is around 92% effective. But for those born before the onset of the epidemic, HIV/AIDS completely transformed the lives of an entire generation of gay men and lesbians. The HIV/AIDS crisis emerged out of a “perfect storm” of the sexual revolution of the 1970s — many gay men regarded promiscuity as a political statement — and the development of urban gay communities and culture, bolstered by the Lesbian and Gay Civil Rights Movement beginning in the late 1960s, which embraced and celebrated being queer. The epidemic has been described as a “modern plague,” impacting people’s personal lives as well as every American social institution.

Image credit: CDC.

In 1981, the first cases of what would come to be known as AIDS were described by the Centers for Disease Control (CDC). Medical professionals noticed cases of a form of pneumonia called Pneumocystis pneumonia, or PCP, an opportunistic infection that manifests in persons with compromised immune systems, in multiple gay men. The media quickly latched onto the connection between gay men and the emerging illness, describing it as a “gay cancer” or as GRID, which stood for Gay Related Immune Deficiency. Those infected experienced acute infections, night sweats, wasting, dementia, and cancer. The idea of a “gay cancer” stemmed from the fact that many infected gay men, due to their compromised immune systems, were diagnosed with Kaposi sarcoma, a rare form of lymphatic cancer primarily associated with elderly men of Mediterranean ancestry that causes dark-colored lesions on the skin.

The CDC first used the term AIDS, or, Acquired Immune Deficiency Syndrome, in 1982, classifying the infection as a sexually transmitted disease, or STD. The inattention on the part of the government to the epidemic necessitated the rise of “AIDS activists,” such as those who founded the Gay Men’s Health Crisis in writer Larry Kramer’s living room. These activists insisted that those with the disease be treated with dignity and respect — as persons with AIDS, or PWAs, not inhuman monsters. Today, we realize that AIDS is simply an illness, not a moral judgement or measurement of someone’s humanity. This was not the case during the early years of the epidemic. Hospitals often turned patients away, or isolated them in separate wards, and funeral parlors refused to embalm those who had died as a result of the virus. Parents were forced to write in their children’s obituaries that they had died of cancer to avoid the stigma associated with the disease.

AIDS activists also educated the community about safe sex practices to prevent transmission of the virus. Given that the gay community, until the 1970s, had largely been closeted and not publicly accepted, it was unrealistic to expect that individuals who had only just discovered a sense of pride in their sexuality would abstain from sex completely. Once people are liberated, it is impossible to go back into the darkness of shame. Pro-sex activists were right to think that abstinence might lead to increased scapegoating due to the association between gay sex and deviance.

Between 1981, when the first cases appeared, and 1986, approximately 40 thousand people died from AIDS complications. On March 10th of 1987, the writer Larry Kramer, enraged by the lack of response to the epidemic, and empathy for the victims, gave an impassioned speech at the New York Gay and Lesbian Center. “Most of you will be dead within 6 months,” he shouted to the crowd, “so what are you going to do about it?” Twenty days after Kramer’s speech ACT UP was founded, and the AIDS civil rights movement was born.

ACT UP adopted the mantra “Silence = Death” and the symbol of the pink triangle from the Silence = Death Project, formed by six gay activists in 1987. The project used the pink triangle to draw parallels between Nazi Germany and the AIDS crisis.

Adopting the mantra “Silence = Death” and the symbol of the pink triangle, a reclaimed icon of queer persecution from Nazi Germany — gay men were marked with pink triangles, a symbol of femininity meant to humiliate them, in concentration camps — ACT UP engaged in some of the most inspired, creative, and successful activism in history. Specifically, they used controversial street activism to demand an adequate and compassionate response from government, the scientific and medical community, insurance and pharmaceutical companies, the communications media, and other social institutions. ACT UP used disruptive and theatrical tactics to bring attention to their cause and emerging technology, such as hand-held video cameras, to document their activism and spread their message. Perhaps most importantly, ACT UP insisted that PWAs be involved at every level of decision making regarding HIV/AIDS testing and treatment, establishing oppressed persons as the primary experts regarding their experience, not politicians or scientific and medical professionals. The mission of ACT UP was not to be liked, but to make a tangible difference in the lives of PWAs. Sometimes, in order to make a real difference and get our message across, we must be controversial.

Example of a graphic created by ACT UP appropriating the conventions of mass media. The poster manipulates an image of Ronald Reagan, the 40th President of the United States, to draw comparison between the government’s lack of response to the AIDS epidemic and the Watergate scandal. Reagan refused to say the word “AIDS” publicly until 1987, when the disease was impossible to ignore, which many regarded as a “scandal” targeting the gay community.

Some of ACT UP’s most notable actions were occupying Wall Street to reduce the cost of antiretroviral drugs; taking on the anti-gay stance of the Catholic Church by staging a massive die-in — a form of protest where participants pretend to die to highlight a deadly social problem — at St. Patrick’s Cathedral in New York City on December 10th of 1989; demanding changes in the demographics of studies to include women, children, and people of color; storming the National Institute of Health (NIH) to demand that scientists get out of their privileged “ivory towers” and work with activists to get “drugs into bodies”; defining health care as a human right; forcing the CDC to change the definition of AIDS to include women’s symptoms; and staging a Day of Desperation on January 23rd of 1991, urging the government to give money to AIDS, not the Gulf War. ACT UP also created influential and eye-catching graphics that appropriated the style of advertising to convey their message.

As much as possible, ACT UP also tried to be intersectional, viewing AIDS not as a singular issue, but as a nexus of multiple social problems. Intersectionality, a term used by academics and activists alike, refers to the ways in which social systems such as race, class, and gender converge, or intersect, to impact people’s experiences of privilege and oppression in particular ways. In short, intersectionality is a way of viewing the world that allows us to see how human experiences and events are shaped by multiple factors. ACT UP understood that we are better able to combat inequality and oppression when we understand how social problems converge to impact what might seem like a single issue.

ACT UP Protestors stage a “die-in” during the 6th Annual AIDS Conference in San Francisco, June 17th–24th, 1990.

The history of ACT UP and the AIDS civil rights movement shows us that, sometimes, we have to go backwards in order to move ahead. There is no denying the impact of HIV/AIDS was devastating to the gay community. This devastation, and the anger stemming from it, was also the catalyst for one of the most bold, confrontational, courageous, and creative activist movements we have ever seen. ACT UP has inspired and impacted other social justice movements such as the various Occupy movements that emerged following the financial collapse in 2008, the national protests to save the Affordable Care Act, former President Barack Obama’s signature piece of legislation, and the writers of the Indivisible Guide, who encourage protesters to film their activism and upload it to social media to spread awareness and hold government accountable. The wheels of justice never move of their own accord. Rather, ordinary people like you and I must make them move, must make them inch forward towards the highest good for all. I’m sure you’ve noticed we are in the midst of a similar moment following the election of Donald J. Trump to the U.S. presidency.

Protesters stage a die-in against the Repeal of the Affordable Care Act in Brooklyn, NY on Saturday March 11, 2017. Photo credit: Theodore Parisienne.

The members of ACT UP did not necessarily know whether their actions would make the lives of queer people and PWAs more livable. But they acted with an enormous sense of responsibility to those who came after them, and they did not let their fear — of silence, of hostility, of disease, of death — immobilize them. People fought and died so that you have the right to exist, so that you could be equal, or at least closer to the goal of full equality than previous generations. Never take this fact for granted.

According to the CDC’s most recent data, approximately 1.2 million people are living with HIV in the U.S., and nearly 40,000 people are diagnosed with HIV each year. Of those newly diagnosed each year, around 73% are people of color. This fact is partly why public outcry over AIDS has declined since the mid-1990s. AIDS is less and less seen as a white disease and is increasingly associated with people of color, in particular, Black and Latino men who have sex with men. And HIV/AIDS affects not only gay and bisexual men: 1 in 4 people living with HIV is a woman. These recent statistics tell us we cannot simply ignore issues that do not impact us or our communities personally — in order to create change, we must first be aware of the problem.

And now that you know this history and these facts, it is your responsibility to “act up” in your own way, to fight to improve the lives of those still with us and those who will come after you; to “act up” on behalf of everyone, not only those whose lives and experiences are most similar to your own.

History is calling you to take up the challenge, and the story of what came before already contains the tools you need to make the change you want to see. Think of history as a pattern of interwoven threads spooling back into the past and forward into a future which has not yet been fully formed. These threads are there any time you need them. You can pick them up and use them to weave the uncertainty of the future into a better shape, a shape that aligns with your vision of the world. Study your history, do not despair, and never give up.

One of ACT UP’s most well-known slogans was:

Act up!
Fight back!
Fight AIDS!

The 30th anniversary of ACT UP is not a celebration, but a call to action renewed. So, I ask you: How will you “act up”? How will you “fight back”? What will you fight for? And what matters to you most?

In solidarity,


A version of this story was originally published at www.theradicalnotion.com on April 29, 2017.

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